"Have I finished with you, have I got Amy instead?"

4 Oct 2018

This was our son speaking, who has severe autism and complex learning difficulties, a little while after he had moved into a residential care home from his home in the family for 19 years. We as a family were at the end of our tether, bless him, and strongly felt we could no longer meet his needs, which were extensive. Today he receives 1:1 sometimes 2:1 care,as he is ambulant, super-fast, exceedingly tall, and very strong. But a tiny child in his brain and bodily functions,alas! Very lovable for all this, needless to say, and so, it was the end of the road for us as a family as far as managing him at home was concerned. With deep regret, but totally united the three of us (we have an adult daughter) that this provision would provide the best answer for the four of us.

And it has. But "finished with you", a direct, almost cutting remark. Such as you might use for an object ("Have you finished with the newspaper?"), or a comfortable armchair. But I was non-plussed. Instead, I saw the question as affirming that he saw the transition from home to care home in those terms. Amy (see the first line) was a marvellous, gifted, intuitive support worker in the care team, who was in post for 13 years, and we thank our lucky stars she happened to apply for the job when she did, straight out of college! She was the same age as our son! And the care provision exceeded our wildest dreams, in that it provided both a safe haven and a place where our dear son was respected and valued for the adorable being he undoubtedly is, with the happy smile which, when he uses it, could melt the ice on a snow- covered mountain!

But... people as objects, albeit cosy, comfy ones? Well, maybe not. Maybe our son had used the language skills he had at his disposal and the sentence came out sounding strange, unfeeling. After all, I had been his Mum for 19 years, and had put many things on hold during that time, including my own career! (And would do it all again, no regrets there). As the weeks and months passed though, I began to see people in a different light. My son's words kept coming back to me, and became somewhat of a jokey expression, a form of shorthand in our immediate family! I did a sideways shift with this comment of his, "finished with you" and thought a lot more about people and their "uses" . I had perhaps expected too much understanding from family and friends about our home situation. They were never to know a lot of it anyway, how could they? Everyone leads a tramline existence, of some sort, and is ploughing their own furrow. Excuse the mixed metaphors!

I have come to an acceptance I think of the limitations we all have, especially my own. Thanks to our son, and his comment. Life is sweeter, and we'll go up to the care home today and fetch him out for a few hours. With any luck, he'll be wearing his huge, heart -warming smile, and even if he never speaks a word the whole time, it'll have been good to see him and be in his company. He gives what he can. As do we all I think.


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